It’s Okay to Politicize Your Child When Politics Are Threatening His Life

“I never imagined I would get involved with something like this,” Jimmy Kimmel said on his show last night. “This is not my area of expertise.” By “this,” Jimmy Kimmel meant American health care, which is currently threatened thanks to the work of GOP senators Lindsey Graham and Bill Cassidy.

Back in May, Kimmel spoke passionately against the Republican health-care bill then on the table. That particular monologue came just a week after the birth of the comedian’s son, who was born with a heart condition requiring life-saving — and expensive — surgery. “No parent should ever have to decide if they can afford to save their child’s life,” he said then, through tears.

Soon after, Senator Cassidy, who appeared on Kimmel’s show, began touting what he called “the Jimmy Kimmel test,” claiming he would never support a health-care plan that fails to protect those with preexisting conditions or reinstates lifetime caps for coverage. As Kimmel pointed out last evening, Cassidy lied.

Under the Graham-Cassidy bill, which does away with Obamacare and Medicaid subsidies and relies on underfunded block grants to the states, states can decide whether to allow insurance companies to discriminate against those with preexisting conditions. The same goes for whether to allow lifetime caps. States would also be able to apply for waivers to change what qualifies as an essential benefit — categories currently required by the ACA — putting coverage like maternity care and prescription drugs at risk. According to the American Medical Association, millions of Americans will lose access to health insurance.

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Like Kimmel, I am politicizing my young son’s health problems. That’s him up in the photo up there. Cute, right? He has cystic fibrosis, a terminal genetic disease that requires rigorous daily treatment. When he turns 2, he’ll be able to begin taking a medication that his doctor hopes will extend his life. This medication does not come without complications: It can have severe physical side effects. It also costs $311,500 a year. The math is staggering — if our insurance company were allowed to impose a lifetime cap of $1 million, my son would hit it around the time he starts kindergarten.

Over the summer, I spoke to seven other parents of medically vulnerable children who were, and are, worried about threats to health care. When I reached out to members of a Facebook group for the parents of children with genetic disease, a Canadian parent responded. I’ll never forget it: She said she couldn’t imagine worrying about the cost of her child’s health care. She said she couldn’t fathom entering every test, visit, and hospital stay wondering what it might cost. Didn’t we, parents who take care of very sick children, have enough to worry about?

Parents like us might be some of the most afraid right now, but the truth is everyone should be terrified. If you or anyone you love is sick, or might become sick some day, this bill is a threat. If you or anyone you love is a woman, this bill is a threat. If you or anyone you know relies on Medicaid, this bill is a threat. In a nutshell, this bill is a threat to every American who is mortal.

To avoid a Democratic filibuster, Republicans have until September 30 to push this bill through. Health-care activists are encouraging people to call their representatives (if you have Democratic senators, try this tool) to express opposition for the bill.